A Final Prescription: Understanding a Patient’s End-of-Life Goals

From attending a bar mitzvah to surgical interventions, new POLST forms ease the conversation.

Cornelia Schmidt's 85-year-old husband Walter is recovering from a fall in October. He's getting around with a walker and making plans to celebrate the couple's anniversary and the weddings this year of their granddaughter and grandson.

"And I want to see him back out on the golf course," she said.

These goals are well known by his doctors and family, the type of life events included in Walter Schmidt's POLST, an acronym for "physician orders for life-sustaining treatment" -- an end-of-life planning tool that goes beyond a living will to empower individuals to shape their final days, set out what they hope to accomplish, and provide instructions for the level of medical intervention they want.

"It makes it easier to talk to your physician, while you are still in fairly good health, and decide just how you want things to be worked out at the end of life," Cornelia Schmidt said on Friday at a conference on POLST, which was signed into law in New Jersey last December.

The conference was at the University Medical Center at Princeton, which last March began a two-year pilot funded by the Robert Wood Johnson Foundation and the Laurie Foundation. The POLST pilot team is led by Dr. David Barile, a geriatrician and executive director of New Jersey Goals of Care, a nonprofit founded to empower healthcare providers and patients to align medical treatment with patient goals.

The form created by Barile and his colleagues begins by asking patients to express their "goals of care." Barile explained, "What the doctor writes here under the 'goals of care' is simply the answer to the question, 'What are your hopes for the future?' And the patient may write 'I want to live independently. I want to die a peaceful death at home. I want to make it to my grandson's bar mitzvah and so on. This is personalized to the patient. And then the doctor completes the rest of the form based on patient's goals."

While POLST is voluntary in New Jersey, state health officials plan to lead a state-wide education effort to promote it.

More than 1,000 POLST forms have been filled out at the University Medical Center at Princeton and at nine skilled nursing facilities in the Princeton area that are participating in the pilot. "It is working really well," Barile said. The POLST process "is not just an inter-institutional doctor's order. We are trying to effect a culture change.

Unlike a living will, also known as an advance directive, the patient fills out the POLST in consultation with a doctor or nurse practitioner. Intended primarily for individuals facing a life-limiting or terminal illness, POLST is signed by the patient or the patient's representative or proxy, and by the doctor or nurse practitioner. It thus carries the weight of a medical order, one that follows the patient across healthcare settings, including hospital, ambulance, nursing home, rehabilitation hospital, hospice, and the patient's home.

Taking the patient's goals as the starting point, the physician or nurse will then recommend the appropriate intensity of medical intervention. The patient can request all available medical or surgical intervention to prolong life, or opt for limited medical intervention, or request palliative care only.

The POLST form piloted at the University Medical Center at Princeton also deals with whether or not to resuscitate the patient in the event of cardiac arrest, or to put the patient on a ventilator, or feeding tube.

"What we have done here is create a template for the discussion as it may happen at the bedside," Barile said. "So we have created a tool to help that struggling doctor have this discussion that begins, 'What are your hopes for the future? Let's organize your care to help you achieve your goals.' We are trying to effect a culture change about decision making."

New Jersey Health Commissioner Mary E. O'Dowd has designated the New Jersey Hospital Association Institute for Quality and Patient Safety to develop a standard POLST form to be used in New Jersey.

Betsy Ryan, the association's president, said NJHA will convene an advisory group of interested parties, "many of whom are in this room," to come up with a recommendation for the exact language to appear on the POLST form that New Jersey will use statewide.

It will take about eight months to develop the form, which will be widely available, and posted on the NJHA website, where it can be downloaded and filled out by patients, physicians and nurse practitioners, Ryan said.

Too many individuals don't know what their options are and "aren't empowered to really have those conversations with their providers so that their own choices and wishes are honored when they are managing some difficult issues near the end of their life," O'Dowd said. "Very often it falls upon family members who are not well versed in these issues and don't understand the wishes of their family members."

Panelist agreed that POLST is by no mean a panacea for family quarrels that erupt at the bedside, and that relatives may seek to overrule the instructions that had been put in writing. The legislation provides for disputes to be resolved by an ethics committee or patient ombudsman at a healthcare facility, or by a court of law. And individuals always retain the power to revoke their own POLST form, and to request a different level of treatment when they are confronted with the reality of dying.

"What we are trying to do is to empower both providers, families and individual patients with the tools and knowledge to have those conversations in a planned and comfortable way, to break down some of the barriers preventing them from having those conversations -- so that people really have a much higher quality of care at that end of life stage," O'Dowd said.

Paul Langevin, president of the HealthCare Association of New Jersey, whose members are more than 300 long-term care facility providers, said POLST "is going to reinvigorate the discussion that we have about end-of-life care. I've been involved in this discussion for the last 25 years of my career, so I am delighted once again to bring it to the forefront and have it on a regular basis before the time to make the ultimate decision is actually an emergent one."

Nursing homes are required to discuss advanced directives with every patient admitted, Langevin said, "but even with that regulatory requirement, sometimes people don't get what they want or they get what one member of the family wants, who may not be the person [the nursing home] had the discussion with when [the patient] originally came in to the facility."

POLST "will be the occasion for having a very frank discussion with people and really I think brings us full circle to implementing patient centered care," Langevin said. The patient must decide "What do I want? Not what's good for the facility, not what the doctors and the nurses at the facility feel comfortable, with but what is that I want to do? How can I have a good death as well as a good life?"

Nursing homes sometimes deal with multiple family members with different agendas, and sometimes there are no family members. In either case, POLST "will give us a much better chance of helping people," he said.

Jerry Nugent, chairman of the board of LeadingAge, an association of not-for-profit long term care facilities, said POLST will initiate the discussion at a much deeper level.

"So many families have a great variety of opinions on what is to happen with their loved one," Nugent said. "The son says this and the daughter says that. And until now, that discussion has not been thoughtfully laid out, particularly with physician involvement. That is what gives strength [to POLST] and its ability to actually be carried out."